Karl Nelsen poses with daughter and Advocate for Super Smiles Sign.

By Karl Nelsen

Here’s what you can expect when you visit your legislators at the National Foundation for Ectodermal Dysplasias (NFED) Advocacy Day on Capitol Hill.

Every office has a receptionist to greet people, answer calls and direct people to the right department within the office. They should be expecting you if you have an appointment arranged by the NFED. Just let them know your name and that you are there for a meeting to discuss the Ensuring Lasting Smiles Act (ELSA)

You will likely have to wait a few minutes until the office representative or the elected official is ready. They usually have a meeting room off to the side or you will be escorted into the main office, adorned with memorabilia from their district. My favorite office freebies are ice cream and potato chips!

Your Talking Points

In most cases, you should expect to meet with an office staffer, either the legislative assistant or the health policy assistant. Occasionally, you will be able to meet with the elected official personally. This is always preferred and occurs more frequently with a representative than a senator. 

The staffer will be very receptive and excited to listen to your story. Take your time. Make sure they understand what you are talking about as they likely have never heard of ectodermal dysplasias

  1. The first five minutes is just to bring them up to speed on the condition.
  2. Then, you can discuss the ELSA bill and how it positively impacts you. 
  3. The office needs to know what steps you would like to see from them. Ask for their support by co-sponsoring ELSA and if possible, help get the bill heard by a committee.
  4. We also need these elected officials to help educate other elected officials.  

Your meeting will most likely last approximately 15 minutes. Afterwards, the staffer will take the information up through the ranks.

Some Congressional offices like to take a picture with you outside their office. Others will take it inside their meeting room.

Photo Op

Please ask for a group photo with everyone involved in the meeting.  When a photo is taken, the office will often place a short article in their newsletter about your visit. This increases our visibility and they use it to show that the elected official is working hard for the constituents. It’s a win-win for everyone.  Please send the photo via email to the NFED at along with information about who is in the photo.

Email Photo to NFED

Follow Up

Persistence helps push the topic along so make sure to get their business card for future communication. Email them a day or two after your meeting to thank them for listening and ask if they have had time to review the ELSA bill.  Ask them if they need any more information from you to help them more forward.

In addition, please communicate your progress with the NFED advocacy committee so we can track sponsors and ensure the lead offices are keeping up with all your work.

Update NFED

Bravo on a job well done! Time for the next meeting which will be even easier. Now you are a professional lobbyist.

Karl Nelsen is a guest blogger for the National Foundation for Ectodermal Dysplasias. Affected by ectodermal dysplasia, Karl serves on the Board of Directors and as an advocacy state lead for Minnesota.

Leave a Reply

Your email address will not be published. Required fields are marked *